At the End of the day...
Its been a tough week.
Tough because Ashley's labs basically are HORRIBLE. Tough because there is nothing we can do to fix her. Tough because despite poor labs she still NEEDS nutrition orders to be written and no one wants to write them because of her labs. Tough because we have spent the entire day trying to get her line to un clot and we can't get anything to work. Tough because we need yet another dose of TPA today since the first isnt working and because of drug shortages we can't get it from the pharmacy. Tough because it looks like Dave is going to have to go back to the ER for the second time with her today.
Here is the deal...Ashley is sick. We know that. Ashley's body is not working. We know that too. NONE of this changes the fact that we still have to wake up every day and keep going. So in lei of this...it would be so appreciated if everyone involved in her care just kept on waking up every day and kept going right along with us. Its exhausting to try and pull everyone along. Totally exhausting. Its frustration like this that pushes us closer and closer toward pallative care just so we can have a group pulling for us and advocating for what is best for her. Its a scary place to find yourself...pallative care...end of life...it sucks. Really it does.
At the end of the day I take my cues from my sweet girl. Despite awful labs, clotted lines, and a broken body...if she is smiling then all is ok in our world. We will get through this week. We will get through this day. We will. If she's happy then the whole world can just take a back seat to that. She is what matters most to us.
Oh yeah...she is smiling today:)
Prayers for a functioning line so we could run TPN would be greatly appreciated!